What’s the point? Is there only one? Are there many? Are there small points making up a big one? How big can one point be and still make sense? How big can it be to influence, to allow you to make a real difference?

Or is it not the point at all that is important? Maybe it’s the person making the point that is much more important than the point? Like: big people making big points, small people making small points?

“I have a dream”, for Martin to say makes sense, “World peace”, for the beauty contest participant to say doesn’t.

When I went to school, just having missed the 60s, but feeling very much connected with that decade, we had a saying “when it doesn’t make sense, at least it makes non-sense”. And we thought that was terribly funny.

Seriously, trying to make sense of what is going on around us doesn’t make sense. But does accepting that it’s all a mystery and leave it like that, unquestioned?

It’s all going back to old Sokrates who knew that he didn’t know anything and thus became one of the wisest men in history. Only fools know the answer to everything.

Today we made quite bit of progress in setting up the company that will deliver Pádraig’s care, hopefully from next month. The paperwork for this is truly amazing, meaning: it’s a lot and it’s detailed. Also, amazingly, got a phone call from the Archbishop’s office to arrange a meeting for late next week to discuss the An Saol Project. Can’t wait for it.

Pádraig had a good day today. He is using the arm trainer more often now (like a MOTOMed for arms) and has managed to move and train for short periods without the support of the build-in motor supporting his arm movements. Given that not so long ago one of his HSE therapists had stopped him from using an arm trainer because “it could cause him injuries”, and even stopping us from purchasing one (John Hume would have asked: “On whose authority?”), Pádraig is doing extremely well!

“When everybody is agreed of the guilt of the accused let him go. Because you can be assured that he is innocent.” Apparently, this is a quote from old Babylonian wisdom.

There is another great quote and this time we even know who exactly said it, the picture kinda gives it away.

This is what we heard tonight when we had watched a film on “John Hume in America”: that the key to success of the peace process in the North was John Hume’s inability to accept anything like defeat.

Here are a few pictures of tonight and of yesterday’s visit by Dolly – remember Dolly?

Pádraig and we all had a great night out. Life can be fun and really interesting.

“I can’t predict the past which changes, at least in this country, every 40 years”, I heard someone saying today.

Have you ever thought about how the past changes?

When pictures from 20 years ago turned up today, I had to put them aside.

Because I couldn’t stand the pain.

The first anniversary of Tom Petty who wouldn’t back down and stand his ground. He knew there was no easy way out. He knew what’s right. In a world that was pushing him around he wouldn’t back down.

Listening on shuffle to one of the greatest collections of music ever, Dylan sang ‘Idiot Wind‘ which I had listened to many times never really been able to de-ciffre the code that runs through that song. It’s not really a song, more like one of these poems for which he got the nobel prize in literature.

It was gravity which pulled us down
And destiny which broke us apart
You tamed the lion in my cage
But it just wasn’t enough to change my heart
Now everything’s a little upside down
As a matter of fact the wheels have stopped
What’s good is bad, what’s bad is good
You’ll find out when you reach the top
You’re on the bottom

It’s life in just one verse.

Tuesday is swimming day. We’re slowly getting used to the new pool. And the pool is getting used to us. Apart from us, there were three other people in the water today. Quite incredible. Pádraig tried out a new exercise: with his knees up against his chest, and his feet against the wall of the pool, he pushed himself back into the water. Some of those pushes were so strong that we had trouble holding him. He had great fun! Seeing us struggle. And he had a great smile on his face when one of his old swimming teachers came over to say ‘hello Paddy’! She is teaching a group of small kids directly after our hour in the pool and is delighted to see ‘Paddy’ back in the water.

After a bit of a rest, we went to a friend’s house who had prepared an absolutely fantastic three-course dinner. It felt like pure luxury to be able to just sit down and eat and drink and be in good company and chat. Pádraig so enjoyed the meal he was delighted when our hosts offered him another bowl with delicious desert to bring home.

Earlier today, we decided how to proceed with the premises we’re hoping to rent for the An Saol Project.

We’ll be looking for staff, from cleaners, to nurses and therapists, as well as carers and programme co-ordinators to help me run the project. Would you be interested or do you know anybody who might be interested?

“The answer to any important question is yes… and no”, someone said this morning on the radio. Over the past five years most questions I was confronted with had not just one answer.

One of those questions was about life and death. I was in such a panic, I was so frightened, and I felt such a responsibility passed on to me by Pádraig’s doctors, that I wanted to give a firm, clear, unambiguous answer. But that was a type of answer I really could not give. It was a truly terrible time, until it transpired that it was not up to me anyways to give that answer. And not to the doctors either. Especially not up to them.

Pádraig had an appointment in the CRC seating clinic to where he had been referred by his OT. They will be looking at finding better support for his back. And they will be looking for wheelchairs that are a little more road-worthy than the chair he’s got now, which is really just a transfer chair, to be used in doors. They are going to organise another appointment in 6-8 weeks’ time. My guess is that it’ll be Christmas. With luck.

While we were there I had one of those moments when I have to leave. For everybody’s sake.

We were asking, in the physio office, about the lovely hydro-pool in the CRC and were told that it is only for those participating in a special rehabilitation programme. And that it is only for children. And that the physio lead for adults makes only very rare exceptions from this rule. For some adults already in a certain programme. Never for adults like Pádraig. Was the implied statement. “I am sorry to be the bearer of bad news.” She said. I bet you are. I thought. I wanted to note down the name of that physio so that I could contact her and asked the secretary repeatedly for a loan of the biro in her hand to note down the name in my notebook. She wouldn’t give it to me. There was a rule and there was no point in even asking for a biro, never mind for an exception explaining that we were living just a few kilometres down the road, that there was no other hydrotherapy pool around, that it could be really beneficial for Pádraig, that Pádraig deserved any help he could get, and that we would come at any hour of the day that suited them.

Surreal.

Most people agree that money has three main uses: as a medium of exchange (to facilitate transactions), as a store of value that can be transported and is accepted everywhere, and as a unit of account or a common measure of the value of goods and services.

Some people say that money seems to bring out the worst in many people. Because for some reason, many people want more of it, no matter what. Even if they already have more of it than they will ever be able to spend. And in most cases getting more money means taking it from other people.

Few, if any, get rich by doing an honest day of work. No policeman, nurse, teacher, carer,  cleaner, lecturer will ever become a billionaire, no matter how hard they work. You can make an honest living, but if you want to make billions you have to take it from others.

Many of Ireland’s wealthiest people are taxed at a rate below that of average workers,  according to the Comptroller & Auditor General (C&AG). “And 83 of these so-called high net worth individuals, or one in four of the total, declared taxable income of less than the average industrial wage, which is just over €36,500”, according to the findings of the report quoted by The Irish Times a few days ago.

The Irish Times says that “just 10 taxpayers from the group were responsible for 85 per cent of the €473 million income tax bill owed in total, meaning that many of the rest paid relatively little. Some declared little income for tax here, presumably due to tax residency elsewhere, while other successfully used a range of credits and reliefs to shelter income from tax.”

You couldn’t blame these rich people to look after themselves. In the same way that you couldn’t blame a plumber getting paid in cash on not declaring his income. Or those claiming unemployment and other benefits when they really are not entitled to those benefits.

Who one could blame is the government and its administration for not establishing and then enforcing rules that would prevent people taking advantage of others, in this case those who do an honest day of work and pay there taxes. Who one could blame is a society that not only allows but in some cases seems to encourage those taking advantage.

As an example, the Irish billionaire JP McManus’ “generosity is fantastic and he should be lauded for it”: the leading racehorse owner shared €3.2million with GAA county boards to support gaelic sports. Yet, the same JP McManus ‘has paid no tax in Ireland for 20 years‘.

Why does all this make me think?

Because if someone, like Jamie Sinnott around 2000, requires special schooling, they should not have to go to the High Court to secure this right. Because if someone requires ongoing, life-long therapy and support because of an accident they should not have to struggle to secure this right. Because the State says it has no money to pay for it.  These rights should not depend on families and friends having to organise cake sales and raffles in order to secure funding for these, ultimately, life-saving services.

In the end, it is up to us and to our decisions, to our preferences. Do we allow people not to pay their taxes to the communities that they live in and do we allow that persons with catastrophic injuries are left behind, are left to die, because ‘there is no funding’?

I’m telling you: these are not tough choices. Especially if you are affected personally.

Am I ranting on?

Too many emotions. No words. A funeral. Never to forget.

It’s a long, long road
From which there is no return
While we’re on the way to there
Why not share
And the load
Doesn’t weigh me down at all
He ain’t heavy, he’s my brother

I don’t know how she did it, but Seosamh’s sister sang all the verses of this beautiful song today at the end of his mass. And it’s a song we should remember. All. Brothers. Always. Forever.

Another busy day. With some really somber moments.

Meeting, telephone calls, discussions, emails. All terribly important.

Then a trip with Pádraig across town to his friend’s Seosamh’s removal.

I have been at many funerals. Too many recently. Never had a removal been as fitting as Seosamh’s. It must have been the spirit of the man himself who turned this terribly sad occasion into a (temporary) fare thee well gathering, oozing with style. His family really managed to capture what Seosamh has been all about. Up to the detail of the ‘Leonard’ hat in his hands. I will never forget this afternoon in Seosamh’s presence.

We’ll be getting up early tomorrow morning for the funeral. I cannot imagine that it will be anything else but a celebration of the life and the everlasting presence of a beautiful spirit.

This was one of Pádraig’s very best friends. That they were there together this afternoon and that Pádraig will accompany his body on his last journey will be terribly sad, but will also be an affirmation of life continuing, of life being lived, of feelings and emotions. And it’s not so long ago that many people were convinced that none of these were ever going to be experienced again by Pádraig

They were wrong.

It was hurricane season in the North of Germany and Seosamh and I were waiting in Hamburg for Pat to arrive. First, her flight was re-routed to Amsterdam, then her train was re-routed to Cologne, and when she finally arrived at around 2pm, Seosamh and I had been evicted from the last late night pub we had found, and we were both fast asleep. What a night!

Seosamh visited Pádraig in Hamburg regularly. He always brought little, really thoughtful presents with him. Some presents were rather big, some were so precious, they were put up as a semi-permanent loan. Until we returned it to him when we were all hoping for a bit of a miracle. This time not for Pádraig. But for the man himself.

Seosamh was there for Pádraig. Doing small subversive stuff. He (re-)introduced food and drink to him we wouldn’t have dared to give to Pádraig at the time because we would have been too afraid that he might not be able to swallow them safely. But what can you do when a guest brings along really nice cream cakes or exotic salads and paella prepared by Seosamh’s Spanish friend? And, of course, Pádraig enjoyed that subversiveness immensely, as well as that delicious food.

At times, stories surfaced which, I was assured, were just scratching the tip of the iceberg. They gave a hint of a life I had never been privy to, but explained why Pádraig, on a given morning, once a week, cooked his Irish Breakfast downstairs in the kitchen just after his return home, when I was getting up to bring his sister to early morning swimming sessions. Those nights must have been magic.

Seosamh visited Pádraig, when he had one of those days off from hospital. Pádraig went to see Seosamh in hospital and in the hospice. Yesterday morning was the last time he went to see him. We knew this would be a last ‘slán’, a good-bye, a see you again until the day we meet again, when we’ll have left all our troubles behind.

Last night, Seosamh sadly died. He went ahead of us.

While Seosamh’s physical presence will be very sadly missed, we will never miss his very unique, subversive, kind, caring and human spirit. That will always stay with us and help us through sad and difficult days.

I passed the day in Dusseldorf at RehaCare in some kind of parallel universe. My talk with my friends from Pforzheim went well. Several families came up afterwards and told us about their experiences. One with a son of 28 who had had an accident at 23 – as Pádraig had. Another one with a young son who had had an accident just one year ago. They were still struggling with doctors and a system that seemed to be more interested in keeping the status quo then helping their son’s rehabilitation. They were all horror stories, all too familiar.

On the positive side, I had a chance to talk to companies developing different types of communication systems, building wheelchairs with the big wheel in front so that the chair can more easily navigate more difficult terrain, manufacturing wheelchair-friendly clothes and covers, and building wheelchair-friendly camper vans with ingenious solutions for the bathroom, beds and seating arrangements. While they are pretty expensive to build, they are available at a reasonable price to rent, not more than the rental of a wheelchair accessible small van would cost.

I know that there are people doing stuff like this all the time. But I am still amazed that all this happened in just one day.

An Irish friend told me a story about sharing and making choices.

When they were kids and had to share some really nice food or sweets, and one of them complained to their father that the other had taken the bigger piece, he asked them: “And which piece would you have taken?” – They always answered: “I would have taken the smaller piece, of course!” – He looked quietly at them and said with a slight grin:”Well, then you’ve got exactly what you wanted, didn’t you?”

There are a least two twists in this story and a dozen layers of complexity. Tons of things to think about.

In Germany, the way we did it was that one person divided the portions and the other one had first choice. First choice in Germany naturally meant that you were getting the largest piece, so it was in the other person’s best interest to divide the portions equally because otherwise they would loose out. The idea of taking the smaller portion would not have crossed anybody’s mind.

Not really much complexity. Pretty much straight forward.

Pádraig went to visit his friend in the hospice. It was a tough visit but at the same time   one the reassured him that his friends is not in pain and seemed to be relaxed. In the afternoon he went to a walk in what must have been to warmest day ever at the end of September.

I’m getting ready to get up at 5am to catch a flight to Dusseldorf where I will meet potential suppliers for An Saol, and were I have been invited a talk about the Journey into a New Life. Back late tomorrow evening.